Vitiligo: Patient stories, self-esteem, and the psychological burden
P.E. Grimes, MD
⁎, M.M. Miller, BS
Vitiligo & Pigmentation Institute of Southern California, Los Angeles, CA
Division of Dermatology, David Geffen School of Medicine, University of California, Los Angeles, CA
Keck School ofMedicine, University ofSouthern California, Los Angeles, CA
Received 4 October 2017
Received in revised form 23 November 2017
Accepted 23 November 2017
quality of life
Vitiligo is a relatively common disorder that is characterized by depigmented patches of skin. Multiple
studies characterize the overwhelming psychological burden that is experienced by many patients around
the globe. This review examines personal patient stories and the impacts of age, culture, sex, race, and eth-
nicity in relationship to altered self-esteem and quality of life in patients who live with vitiligo.
© 2017 The Authors. Published by Elsevier Inc. on behalf of Women's Dermatologic Society. Thisis an open
access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Vitiligo is an acquired disorder of pigmentation that is characterized
by depigmented patches of skin due to the loss of melanocytes.
Depigmented patches may appear in a localized or very generalized
distribution. Vitiligo affects 1 to 2% of the global population with an
equal incidence in male and female patients and in all racial/ethnic
groups (Grimes, 2016a). Multiple theories have been proposed
regarding the pathogenesis of this disorder (Harris, 2017). Current
data suggest that vitiligo results from the complex interplay of genet-
ics, oxidative stress, and autoimmunity (Grimes, 2016a). Recent
studies document the role of CD8 lymphocytes and the interferon-γ
CXCL10 cytokine signaling pathway in mediating the destruction of
melanocytes in patients with vitiligo (Harris, 2017).
Therapies for vitiligo address the stabilization of the disease as
well as the repigmentation of depigmented patches. Therapies that
affect disease progression include systemic steroid medications, oral
mini-pulse corticosteroid therapy, minocycline, and methotrexate.
First-line therapies for repigmentation include topical corticosteroid
medications, calcineurin inhibitors, and narrowband ultraviolet B
phototherapy (Grimes, 2016b).
Many global cultures and societies place a profound signiﬁcance
on appearance, esthetics, and pigmentation. Any condition that affects
appearance may be fraught with loss of privilege, opportunities, and
often upward societal mobility (Grimes, 2008). Given the inherent
visibility of skin disorders, self-esteem is often compromised. The
feeling of being ugly or undesirable has been described in patients
with a myriad of cutaneous diseases that range from acne to alopecia
areata to vitiligo. Skin disorders that negatively alter appearance have
the potential to affect an individual’scareeraswellaspersonaland
social interactions. This effect on self-esteem and perception of beauty
transcends race, age, sex, and socioeconomic status. Societies that
have a cultural preference for speciﬁc skin tones often perceive
pigmentation as a passport to society, and perceived defects are
often devastating (Grimes, 2008).
Multiple studies have documented the psychological devastation
that is inﬂicted by vitiligo. The seminal study by Porter et al. (1979)
documented the negative impact of vitiligo on patients’self-esteem.
The authors reported that patients who had lower self-esteem coped
poorly with the disease, but patients with higher self-esteem coped
better. Subsequent global studies have consistently reported the
negative impact of vitiligo on patients’self-esteem and quality of life
(QoL). Vitiligo causes isolation, stigmatization, loss of self-esteem,
International Journal of Women's Dermatology 4 (2018) 32–37
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☆☆ Conﬂicts of interest: The authors have no conﬂicts of interest to disclose.
E-mail address: firstname.lastname@example.org (P.E. Grimes).
2352-6475/© 2017 The Authors. Published by Elsevier Inc. on behalf of Women's Dermatologic Society. This is an open access article under the CC BY-NC-ND license (http://
Contents lists available at ScienceDirect
International Journal of Women's Dermatology
depression, and self-consciousness. Herein, we highlight several
patients’personal experiences in coping with vitiligo and review the
psychological impact of this traumatic disease.
Subject 1: 13-year-old Hispanic female patient (Skin Type IV)
I was about 6 years old when I found out I had vitiligo. At ﬁrst, I didn’t
know what it was but I quickly learned. When I was growing up, I didn’t
care what I looked like. Then, I switched schools and I didn’tknowwhat
kids at school would say or think of me. However, they quickly learned
and they accepted me for me. They don’t care what I look like, which
makes me feel happy. When I’m not at school, I will have my moments
when I start to cry and tell myself horrible things like “I’mugly,”“what
did I do to deserve this,”and “I’m a horrible person.”I know my family
loves me for me, but sometimes it doesn’t feel like enough. Now that
I’menteringmyteenyears,I’ve started to care more about my self-
appearance and self-esteem. I don’t feel pretty with my spots. Sometimes
I wish I could go back to my younger self [who] didn’tcare.Ilookat
pictures of myself without spots and say to myself, “Wow, I didn’t
remember what certain parts of my body looked like and now they
look very different.”I know my teen years will be very different and I
will need to turn to my family and friends for support.
Subject 2: 50-year-old African-American male patient (Skin Type VI)
I knew it was going to be a problem when I just ﬁnished lunch with a
friend and she said, “You have something on the side of your mouth.”
I was working at WABC TV in New York City as the entertainment
reporter. I had gone to the MTV Awards. I saw Michael Jackson’sperfor-
mance on stage. Earlier in the week, I interviewed Whoopi Goldberg for a
reprise ofa one-woman show. I was 26, in the biggest city, at thebiggest
station, and on the top-rated newscast. AND THERE WASN’TANYFOOD
ON MY MOUTH! It was my skin.
I had been able to cover the small spots on my hands and scalp…and
the one small spot just under my nose. But after eating, the corners of my
mouth could not be hidden. I thought the life I had created was over. I
didn’t know how to react. And with time it got much worse. My Emmy
Award winning face was gone. I was a splotchy mix of black and white.
And I went through some stages: grief, fear, grief, anger, grief, and accep-
tance. And let me be clear. IT’S BEEN YEARS…of questioning, emotional
struggle, and crazy looksbut the truth is a little shocking. This disease has
become my blessing.
My name is LT, and I am an entertainment reporter/host in Detroit. I
travel the world covering entertainment. I am also thankful to be an
advocate for people like me. And I don’t just mean people whose skin
changes so drastically people question if they should shake your hand
or hug you. I mean people who are struggling to exist comfortably and
lovingly in their own bodies.
Vitiligo can be a challenge but I have found support and guidance
leading to pride for my skin. I have created a life of my own deﬁnition.
And now, I can’t imagine my journey any other way. I have become a
more loving and compassionate man. I am embracing the stares and
directing the attention, when appropriate, to positive ends.
How do I live with vitiligo? I LIVE! Oh, and by the way, I have vitiligo.
Subject 3: 62-year-old Caucasian female patient (Skin Type II)
Born with a bathing trunk melanocytic nevus, all my life I’ve been
self-conscious about my skin. Finding a one-piece bathing suit to cover
my ﬂank, back, and right upper thigh wasn’t possible, but I imagined
that the patches of brown that peeked out didn’t show. No such luck in
locker rooms where, fully naked, I heard taunting as a child and gasps
as an adult. I preemptively warned medical professionals after hearing
the question “Have you been beaten?”too many times.
But nothing prepared me for the white patches that suddenly emerged
in my thirties and that now, in my sixties, cover large areas of my body
and face. You would be wrong to assume that as a white woman, patches
of nonpigmented skin aren’t noticeable or that they don’t provoke
anguish. Perhaps if I were alabaster white, I’d feel differently, but I think
not. To lose color is to be a pale reﬂection of one’s former self, to lose
vividness and vitality. Moreover, in my case, vitiligo is likely a result of
my nevus, of my body killing its own melanocytes like Pac-Man scram-
bling to kill the ghosts before they kill him. In my twenties, I was told for
the ﬁrst time that my nevus could kill me. Vitiligo proves the point.
I know that vitiligo is a far greater cosmetic afﬂiction for black and
brown people. In fact, I feel guilty for complaining or becoming distressed
when people say, “But I can’tseeit.”Though often said with good inten-
tions, such dismissals compound my distress because they gaslight me
and incite guilt. Besides, it is noticeable. Ask the gastrointestinal doctor
who pointed it out to his students when trying to ﬁgure out why I perforat-
ed my colon. Ask the cosmetician trying to sell me foundation not knowing
which skin color she should match. I’mbrave.Iactlikeit’s nothing, just as I
learned to do with my nevus. Then I go home. And then I cry.
People with skin conditions and perhaps other autoimmune disorders
often feel tremendous guilt. Have we caused our lesions because our
emotions are intense, because we’re angry, because we can’thandlethe
normal stresses of life? Has it spread because we don’t meditate or do
yoga or eat enough kale? John Updike called psoriasis, a condition he
hid for much of his life, a dermal sin to which he had to confess. Never
mind that we control very little in our lives, our culture demands, indeed,
runs on the illusion that we have control if only we would seize it.
Incurable and unpredictable, vitiligo could not have provided a more
perfect spur to the anxiety and depressive disorders I’ve had to manage
since childhood. My clothes can no longer hide my skin disease. My
skin has become a living metaphor.
But meet me on the street tomorrow and you’ll never know that I’m
hopeless or hiding. Be a ﬂy on the wall in my wonderful dermatologist’s
ofﬁce and you’ll hear me tearfully confess my dermal sins and, perhaps,
decide to begin treatment anew. Because when your doctor has a great,
big soul, you too might say to yourself, why not? Why not keep trying?
These stories are profound personal narratives of stigmatization,
loss of self-esteem, emotional traumas, grief experiences, and coping
strategies. They reﬂect and provide a cross-cultural, multi-ethnic, age,
and sex perspective of the burden of disease (Figs. 1, 2, and 3).
Impact of sex, culture, and race/ethnicity
The impactof vitiligo on patients’QoL has been assessed in global
populations, and the outcomes vary. However, most results substan-
tiate the negative impact of the disease on patients’QoL (Table 1;Bae
et al., 2017; Belhadjali et al., 2007; Bhandarkar and Kundu, 2012;
Borimnejad et al., 2006; Boza et al., 2016; Chan et al., 2013; Elbuluk
and Ezzedine, 2017; Ezzedine et al., 2015, 2015; Ingordo et al.,
2014; Kiprono et al., 2013; Komen et al., 2015; Ongenae et al., 2005;
Parsad et al., 2003; Radtke et al., 2009; Silverberg and Silverberg,
2013; Talsania et al., 2010; Teovska Mitrevska et al., 2012).
In a large study of 1541 patients, the authors evaluated the associa-
tions among vitiligo extent, distribution of disease, and QoL impair-
ment. Vitiligo had indeed a negative impact on total Dermatology Life
Quality Index (DLQI) scores. Scores were signiﬁcantly associated with
an affected body surface area (BSA) of greater than 25% and body
parts affected (Silverberg and Silverberg, 2013). Eighteen percent of
patients reported sexual dysfunction, with equal frequency in male
and female patients, which correlated with the presence of genitalia le-
sions. In contrast, other studies have reported greater sexual dysfunc-
tion in female patients compared with male patients (Borimnejad
et al., 2006). In an Italian population of 161 patients, although vitiligo
33P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37
had only a mild impact on QoL, DLQI was signiﬁcantly associated with
female sex and facial involvement at the time of the onset of the
Several studies have compared the QoL of patients with vitiligo to
that of patients with other chronic dermatological diseases such as
psoriasis. Porter et al. (1986) and Ongenae et al.(2005) both reported
higher DLQI scores in patients with psoriasis overall. However, in the
study by Porter et al. (1986), self-esteem measures did not differ. In
contrast, Ongenae et al. (2005) reported that although women with
vitiligo and psoriasis had comparable scores, men with vitiligo had
signiﬁcantly lower DLQI scores compared with men with psoriasis,
which again indicates a sex divide in coping with the disease.
Myriad authors have reported a relationship between culture and
the psychological burden of vitiligo. Historically, patients in India
experience psychological trauma and stigmatization. In the Indian
book Rigveda, a person who suffers from Switra (vitiligo) and the
person’s progeny are disqualiﬁed from marrying (Elbuluk and
Ezzedine, 2017; Ezzedine et al., 2015, 2015). The psychological burden
of the disease is profound for young, unmarried women. Given the
systems of arranged marriages, vitiligo lessens the possibilities for mar-
riage. Moreover, in married women who develop vitiligo, the disease
increases the possibility of divorce. Finally, patients in India with high
DLQI scores did not respond as well to therapies for repigmentation,
which suggests that psychological intervention should be included in
the hierarchy of therapies for vitiligo (Parsad et al., 2003).
Thompson et al. (2010) interviewed seven South Asian women
who lived in the United Kingdom and analyzed their data with a
qualitative method of template analysis. All women experienced
stigmatization, which was often associated with cultural values that
are related to appearance and myths of vitiligo. One woman stated,
“My grandma (in Pakistan) was like, ‘Oh you can’t take her with
you (to visit friends and family) because of her skin, what will other
The assumption is often made that the psychological burden of
vitiligo is greater in racial/ethnic groups with darker skin. A recent
survey stratiﬁed 300 patients by skin phototype, including 234 pa-
tients with fair skin and 66 patients with dark skin. The patients
with darker phototypes were of Caribbean, South Indian, or Middle
Eastern ancestry. Even though the dark skin phototypes perceived a
signiﬁcantly greater difference in the burden of vitiligo on daily life,
overall self-perceived stress that was associated with vitiligo was
similar regardless of the skin type (Ezzedine et al., 2015, 2015). In
contrast, Porter and Beuf (1991) studied vitiligo in 158 patients and
Fig. 1. Depigmented patcheson the trunk and axillary regionof a 52-year-old African-
American female patient
Fig. 2. Extensive depigmented patches on the back of a 48-year-old Hispanic female
Fig. 3. Severe depigmented patches on the trunk of a 9-year-old Caucasian female
34 P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37
found no differences in the degree of disturbance of vitiligo in
African-American and Caucasian patients. Even though both groups
were affected negatively by the disease, self-esteem and perceived
stigmatization of vitiligo were similar. These ﬁndings raised the
possibility of different support networks and resources that may
affect African-American patients’coping skills for vitiligo (Porter
and Beuf, 1991).
As noted, studies have reported that a greater extent of BSA
involvement has a correlation with a more severe impact on patients’
QoL (Silverberg and Silverberg, 2013). In addition, multiple studies
have found that lesions that affect more visibly prominent areas
such as the face and hands and more sensitive areas such as the
genitalia have a more severe impact on patients’QoL.
Patients with involvement in unexposed genital areas often do not
report these lesions to healthcare providers out of embarrassment or
even stigmatization that this could be related to a sexually transmitted
disease. Genital involvement and generalized vitiligo are signiﬁcant
risk factors that affect patients’sexual lives (Cupertino et al., 2017). In
a study of 167 patients, 14% had vitiligo patches in their genital area;
of those, 21.6% reported that vitiligo negatively affected their sexual
relationships (Kim et al., 2013). Talsania et al. (2010) found that 56%
of survey respondents reported genitalia involvement, which is a
much higher number than previously reported. The authors also
found that 76% of survey respondents had facial involvement and
considered this to be more disﬁguring, with 56.6% of respondents
classifying the effect on theirQoLasmoderatetosevere.
Impact on children
Children comprise 25 to 38% of patients with vitiligo (Grimes,
2016a). Several studies have addressed QoL impairment in children
with vitiligo. Boza et al. (2016) assessed QoL in a series of adults
with the Vitiligo Quality of Life Assessment (VitiQol) and the DLQI
Review of various studiesin the literature that chronicle the extent vitiligo on QoL in different countries and patient populations
Title of study Country Number of subjects Skin phototype DLQI score (SD) Comments
Living with vitiligo, results form a
national survey indicate differences
between skin and phototypes (2015)
France 300 (216 F, 82 M) Fair (n = 234)*; Dark
(n = 66)** *Fitzpatrick
I-III, **Fitzpatrick IV-VI
Fair: 8.3 (6.2);
Dark: 10.1 (6.1)
Patients with darker skin type reported
statistically signiﬁcant (p= 0.049)
higher DLQI scores
Investigating factors associated with
depression of vitiligo patients in
Singapore 222 (115 F, 105 M) Not assessed 4.0 (4.4) Female patients reported statistically
signiﬁcantly higher DLQI scores, 4.8
(5.1) vs. 3.2 (3.2), respectively.
Quality of life in family members of
vitiligo patients: A questionnaire study
in Saudi Arabia (2013)
Saudi Arabia 148 (72 F, 69 M) Not assessed 9.0 (6.5) Family DLQI was measured and found
to be 10.3.
To what extent is quality of life impaired
in Vitiligo? A multicenter study on
Italian Patients using the DLQI (2014)
Italy 161 Not assessed 4.3 (4.9) More severe QoL impairment was
associated with the female sex.
Association between vitiligo extent and
distribution and quality of life
United States of
1541 (1080 F, 433 M) Not assessed 5.9 (5.5) Affected BSA N25% was correlated
with signiﬁcant QoL impairment.
Factors affecting the quality of life in
patients with vitiligo: A nationwide
Korea 1123 (514 F, 609 M) Not assessed DLQI not used Skindex-29 usedas a QoL
measurement. Larger BSA involvement,
involvement of visible body parts and
higher educational level were all
associated with larger QoL impairment.
Quality of life impairment in children and
adults with vitiligo: A cross-sectional
study based on dermatology-speciﬁc
and disease-speciﬁc quality of life
Brazil 117 (75 F, 42 M) Not assessed 3 Women had statistically higher DLQI
scores than men (3.0 vs. 2.0,
Quality of life with vitiligo: Comparison
of male and female Muslim patients in
Iran 77 (53 F, 24 M) Not assessed DLQI not used Modiﬁed DLQI used, women with
vitiligo experienced signiﬁcantly
lower QoL compared with men.
Dermatology Life Quality Index score in
vitiligo and its impact on the treatment
India 150 (83 F, 67 M) Not assessed 10.7 (4.6) No statistical signiﬁcant difference in
DLQI scores related to sex. Age of
vitiligo subjects and DLQI scores were
Quality of life of patients with vitiligo
attending the Regional Dermatology
Training Center in Northern Tanzania.
Tanzania 88 (52 F, 36 M) Not assessed 7.2 (4.8) Female sex, BSA affected and previous
treatments were statistically
signiﬁcantly associated with higher
Willingness-to-pay and quality of life in
patients with vitiligo. (2014)
Germany 1023 (731 F, 292 M) Not assessed 7.0 (5.9) Female patients experienced higher
DLQI scores (7.0) versus male patients
Vitiligo and quality of life: A case control
Tunisia 60 (30 F, 30 M) Not assessed 9.4 (4.1) Quality of life was signiﬁcantly more
impaired in female patients and in
cases with more than 10% BSA
Vitiligo is more than skin deep: A survey of
members of the Vitiligo Society. (2010)
United Kingdom 520 (354 F, 166 M) Not assessed DLQI not used Participants could classify their vitiligo as
having a major, moderate, minor, or
trivial effect on their QoL. A total of 86
patients (16.6%) rated the QoL effect as
major, 206 patients (40.2%) as moderate,
152 patients (29.7%) as minor, and 50
patients (9.8%) trivial.
BSA, body surface area; DLQI, Dermatology Life Quality Index; F, female; M, male; QoL, quality of life; SD, standard deviation
35P.E. Grimes, M.M. Miller / International Journal of Women's Dermatology 4 (2018) 32–37
and in pediatric patients using the Children’s Dermatology Life
Quality Index (CDLQI) and found a signiﬁcant correlation between
age and CDLQI score in children. In another study, the QoL of 50
children with vitiligo was compared with 50 children with atopic
dermatitis and healthy controls who were matched for age and sex.
Patients with vitiligo had signiﬁcantly higher CDLQI scores compared
with healthy controls. CDLQI scores were also signiﬁcantly increased
compared with those of patients with atopic dermatitis except in the
parameters of pruritus and sleep (Dertlioğlu et al., 2013).
QoL assessed by the CDLQI was examined in 24 boys and 50 girls
with matched controls for sex and skin type. Even though the QoL
in the patients with vitiligo was not signiﬁcantly impaired, they
reported a spectrum of negative experiences. Sixty-six percent of
patients were distressed by their disease, and 92% had experienced
low-key stigmatization (Krüger et al., 2014).
Silverberg and Silverberg (2013) performed an online, parental,
questionnaire-based study of 350 children ages 0 to 17 years using
the CDLQI and showed that vitiligo negatively affected CDLQI scores.
The most bothersome sites for children and their parents were the
face and legs. A BSA greater than 25% was associated with self-
consciousness, fear, and bullying. Teenagers ages 15 to 17 years
experienced the most self-consciousness of all pediatric age groups
(Silverberg and Silverberg, 2013). Another study reported that, in
general, social and psychosocial development and general health-
related QoL in young adult patients with childhood vitiligo were not
different from those of healthy controls. However, patients who
reported negative childhood experiences had signiﬁcantly more
problems in social development as adults compared with those
with positive experiences (Linthorst Homan et al., 2008).
As with adults, these studies suggest that children experience
substantial trauma related to vitiligo.
Effects of disease on family members
Several studies have assessed the QoL of family members of pa-
tients with vitiligo. One report in the literature studied 50 families of
children with vitiligo and 50 families of healthy children. The
psychological impact of the disease on parents was measured using
the Self-Rated Health Measurement Scale (SRHMS) and the Dermatitis
Family Impact (DFI) questionnaire. SRHMS scores for parents of
children with vitiligo were signiﬁcantly lower than for parents with
healthy children, and mean DFI scores in affected families were higher.
The ﬁndings suggest that parents of children with vitiligo suffer
signiﬁcant psychological trauma and an altered QoL. The impact on
mothers of children with vitiligo was greater compared with fathers
(Amer et al., 2015).
Another study assessed the QoL of family members of patients
with vitiligo in Saudi Arabia. Data were collected for 141 patients
along with their family members over age 18 years who were living
in the same household. Validated QoL questionnaires included the
DLQI and the Family Dermatology Life Quality Index (FDLQI). Family
members’QoL was negatively impacted in 91.5% of cases. Hence,
vitiligo had a major impact on the QoL of family members of patients.
The most affected FDLQI that was reported by the authors, in order of
decreasing frequency, were emotional impact, burden of care,impact
on the physical wellbeing of family members, reactions of others in
response to the patient’s appearance, and effect on social life (Bin
Saif et al., 2013).
Many clinical trials and reviews do not address QoL as an outcome
measure, despite overwhelming evidence of the psychological bur-
den of vitiligo. A study published in 2012 found that repigmentation
was the most common outcome measured in clinical trials (96%) and
only 9% of clinical trials had assessed QoL outcomes. The authors
proposed that future clinical trials address the following items in
addition to repigmentation: cosmetic acceptability of results, global
assessment of the disease, QoL and maintenance of repigmentation,
stabilization of disease, and medication side effects (Eleftheriadou
et al., 2012).
There is indeed a dearth of literature that addresses the need for a
spectrum of intervention approaches to improve the psychological
burden of vitiligo. In a study of 53 patients in India, major depressive
disorder was reported in 57% of patients, social phobia in 68%, and
suicidal ideation in 28% (high risk 8%; low risk 21%). These ﬁndings
stress the need for psychological and/or psychiatric intervention
(Ramakrishna and Rajni, 2014). Papadopoulos et al. (Papadopoulos
et al., 1999) reported that counseling and cognitive behavioral therapy
could improve self-esteem, body image, and overall QoL in patients
Cosmetic camouﬂage was recently shown to improve the QoL of
children with skin disorders. Twenty-two children with different cuta-
neous disorders were studied, of whom eight had vitiligo. The authors
found that there was a statically signiﬁcant reduction in CDLQI and
FDLQI scores with cosmetic camouﬂage (Salsberg et al., 2016).
Vitiligo is one of the most psychologically devastating diseases in
dermatology because of the global paradigm of pigmentation as a pass-
port to society in many cultures. Although the contrast of depigmented
patches is most visible in racial/ethnic groups with darker skin, all pa-
tients with vitiligo experience some degree of emotional devastation
that is caused by the disease. Physicians must have a heightened
awareness of the impact of vitiligo on self-esteem and QoL. Such
awareness and vigilance as clinicians in monitoring and addressing
the mental health needs of patients with vitiligo is crucial to optimize
patient care. Interventions should address dispelling myths that sur-
round vitiligo, including the notion that vitiligo is a cosmetic disease,
while offering or providing optimal therapies for repigmentation.
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